Cardiology

Khloe had her first visit with the cardiologist at Children's yesterday. We started off with vitals and an EKG. We are happy to report that she is now 8 lbs 2 oz, which means she is getting enough to eat and gaining weight well and this is a very good thing because many babies with this type of heart defect have troubles with eating and therefore fail to gain weight. The cardiologist explained to us that Khloe has a hole in the upper part of her heart between the atria, but from what they can see there does not appear to be a hole between the ventricles. Her valves are affected as well though, basically since the heart didn't form fully there was no separation of the valve into two separate valves. She just has one large valve and it is leaking into her right atrium.

So, what does all this mean? Simply that her heart did not fully develop which caused the hole and only one leaky valve rather than two tight valves. Her oxygen rich blood and her oxygen poor blood is mixing in her heart which results in oxygen poor blood being sent out to the body. Also, blood is leaking back into her right atrium because of the valve.

However, since she is doing well and only mildly symptomatic at the current time we are able to put off surgery for a little while so that she has time to grow, which will make the repair easier for the surgeons. If she does begin showing more symptoms though they will do surgery sooner. As of now the only symptoms that we are consistently seeing is that she will turn blue around her mouth and nose, and her palms and feet turn purple.

My job right now is to keep her eating well and gaining weight while making sure to carefully monitor for symptoms of heart failure, when we see symptoms of heart failure that means it is time to go in and fix this right away because her heart has been working too hard and will stop if not repaired. The cardiologist told us to expect for surgery anytime between two months old to six months old, hopefully closer to the latter.

For now we will continue monitoring and keeping up with cardiology appointments until it is time to prepare for surgery. It is terrifying knowing that I am watching and waiting to show signs of heart failure. You never expect this kind of thing to happen to you. We all think that we are exempt from these types of things, but obviously that is not the case. How do you knowingly sit back and wait for your baby's heart to begin to fail so that they can do open heart surgery on her? I am worried that I will somehow miss the warning signs or not realize them until it is too late. I am scared to go back to work and leave her with someone other than me. I don't know how to handle the worries and fears that go along with this.

Please continue to pray for our family.
Thank you!